Sexuality and Terminal Illness

[Frances Shani Parker]

Living with terminal illness can be traumatic to patients’ sexual well-being. Communication is critical for making good sexual adjustments during this vulnerable time. Professional help can often make this transition easier. According to the “American Journal of Hospice and Palliative Care,” there is a place for sexuality, depending on patients’ conditions, during a terminal illness. Health professionals should acknowledge and support patients’ desires to function sexually within their abilities. In fact, health professionals can initiate this discussion. What are your thoughts on this seldom discussed topic? Have you dealt with this in your hospice work? Frances Shani Parker, Author "Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes” "Hospice and Nursing Homes Blog"

[brittany bennett]

This is a touchy subject no pun intended. I had a man who was touchy feely and he told me that he felt vulnerable because he had no control over his body. Nurses,doctors aides etc had access to his naked body and he had no recourse. I introduced him to another hospice patient and they started a very brief affair. My goal wasn`t to have them have sex it was to have some female companionship. I used to think that sex and death should not be discussed ,but now I see it is a subject that may have to be broached.

[Frances Shani Parker]

Irene, thank you for your kind words. I commend you and others who support eldercare and the terminally ill.

[Irene Smith]

Frances,

I am deeply inspired by your devotion to the elderly and the ill. Your voice for treating the elderly and the ill as whole individuals is a voice that needs to be heard. I totally agree about rooms that allow for a life.

Thank you for educating me and all others who might read this dialogue on the issues you have raised concerning sex offenders. I hear your concern and I hear your knowledge. I will print this out and take it to my coalition meetings in November.

Our missions, although the same take different paths. No matter what path, the issue of honoring the elderly and terminally ill as whole individuals, which includes sexual beings, is a topic that needs to be addressed.

blessings Irene Smith Author of Touch awareness in Caregiving

[Frances Shani Parker]

Irene, I’m glad you responded to this post. Sex and death are still America’s biggest taboos. But sometimes we have to “go there” when issues need to be brought out in the open. I also have had men in hospice make passes at me, including a man who only had arms and no legs. In my book, I mention how his arms received quite a workout grabbing at me and other women who approached his bed. He was a delightful person. I have also had men with dementia refer to me as their wife and ask me for sex. All of this was reported appropriately. Clearly, sexuality is a concern that should be addressed beyond giggles and criticisms. Society does this enough with old people in general, as if sex is only for youth. Elderly and ill people still have feelings, desires, and rights.

Because my focus is nursing homes, I also want to mention conjugal visits. Many of my patients have shared rooms with three other patients, some in varying stages of dementia. If federal law guarantees the right of residents to communicate privately and without restriction with chosen people, including with conjugal visits, the facility must make arrangements to allow private visits. This should also be an important consideration for culture change in nursing home reform by having rooms that are more accommodating.

Finally, I must mention non-consensual sex, which is a crime. Registered sex offenders are being placed among vulnerable nursing home populations. States have broad discretion on how to implement notification of sex offenders. Nursing home administrators are not always aware of sex offenders’ previous convictions. Even when they are, due to the privacy rule, they are often not sure if they can share that information with others. Known sex offenders are usually evaluated on their demonstrated behavior and not separated from other residents. Oklahoma is the first state that takes registered sex offenders requiring long-term care out of standard nursing homes. In the meantime, caregivers must be vigilant in checking their patients for signs of emotional or physical abuse and personality changes. They should also be proactive in dealing with nursing home safety measures, including behavioral and physical patient assessments.

[Irene Smith]

Frances,

I am so glad to see this vital and rarely discussed topic come to the surface. As a touch person I wittness the more sensual needs of the patient. The need to be sexually active or just to be recognized as a sexual being is a need I wittness often. As a touch person however it is not appropriate for me to dialogue about this need to the patient. I will take it to my contractor. Whoever that may be.

A couple of stories. One of my geriatric male clients was, bedridden and on oxygen. He wanted full body massage and really loved it. His energy however felt too sexual, and after several sessions he began to make sexual gestures and requests. I let him know that this was uncomfortable for me and clearly stated my boundries.

I took this behaviour to the conservator who was my contractor. It seemed that everyone on the health care team was having the same difficulty. This client wanted sexual dialogue to assist him in meeting his needs. The conservator invested in a phone sex line for this man. This eased his needs , brought him comfort and peace, and relieved the health care team. This fullfillment restored the ability for the team to provide quality care.

I think this is an amazing story. The maturity and compassion exhibited by the conservator is a masterpiece. So often this need is made inappropriate because the team is not comfortable enough to handle it in a compassionate way. I watch care providers giggle at sexual energy,and treat adults like naughty childern many times in facility care.

From my observation alot of training would be necessary for health care professionals to bring this discussion forward . It would need a team that could receive the patient that was given permission to have their sexual energy , as well as create a safe place for this need to be met.

I worked with a man in an inpatient hospice who tried to fondle all of his caregivers. The caregivers were very challenged in providing care for him. . He would also sit in the hallway in his wheelchair and fondle himself. Everyone was upset. In our first massage session he reached for my chest and I simply gave him my arm and some lotion. He massaged my arm. He was very needy to touch back. Our sessions were wonderful. He'd massage my arms. I also taught him to massage his feet. He needed an appropriate vehichle to express his need to touch. I have frequently, redirected what many times is called naughty , in this way .

Big topic Frances.Honoring the patient as whole absolutely includes honoring the patient as a sensual, sexual being.

Irene Smith Author of Touch Awareness in Caregiving and Providing Massage in Hospice Care

[brittany bennett]

Yes difficult dilemma.